January was meant to be my recovery-from-surgery time, as well as my getting-strong-for-radiotherapy time, but seeing as I am so damn difficult, I couldn’t do that could I? I woke up on January 1st after an alcohol-free day before, feeling like I had a hangover. I felt awful and spent most of the day in bed. I was feeling so bad (I had a temp of almost 40oC and a heart rate of over 130bpm) that I called the doctor out the next day, who said it was gastric ‘flu so I just needed to rest etc., which I did. I started feeling better and by the end of the week I thought I was over it, but I went downhill again fast. I saw my oncologist again on the Monday and after telling her how I was feeling she examined me and admitted me immediately. It was seven weeks post operation and even my surgeon didn’t believe I had an infection, but this is me we are talking about, remember? I don’t like to follow the rules as I have already pointed out! So another nine days in hospital due to a collection (infection) in the muscle of my abdomen, followed by a 5th stay in hospital to have my ovaries moved as far away as possible from the field of radiation.
Because I was so unwell due to the infection, I couldn’t really take in what I had been told by my Oncologist on the day of my admittance to hospital. She told me that The Royal Marsden had looked at my case and the recommendations had come from Dr Peter Blake, the head of their Radiology dept. and one of the foremost Oncologists in the country. It was his recommendation that I have Chemoradiotherapy, something that had never been discussed previously and as expected it hit me and my family quite hard. For me, chemotherapy was devastating to people; I thought you couldn’t go through chemo and not come out of it looking or feeling like you had just about escaped death and I am sure that is what my family felt too. Having been through it I now know differently, but only a few months ago I was terrified.
For five weeks my life stopped being my life. Mondays were chemo days. Because Cisplatin can be quite harmful to the kidneys, I would spend the whole day in hospital being hydrated and having my fluid balance checked rigorously. Now, I am not a big drinker and to take on a litre a day is normally my limit, but because of the treatment, I was having at least five litres pushed through me in the course of eight hours! I have never been so well hydrated in my life! The first week of chemo was actually better than I had anticipated – you always imagine it to be worse than it ever really is. I didn’t have to worry about hair loss so the worst side effect for me personally was going to be the sickness. Thankfully the anti-sickness drugs were very good at alleviating the sickness but for me they had the knock-on effect of alleviating me of my appetite as well.
The radiotherapy was given alongside the chemo because Cisplatin is a radiosensitiser so it makes the treatment more effective with less effect on normal tissues. When I heard this I thought yeah, give it to me with both barrels and let’s kill this b****** once and for all. For the first two weeks of radiotherapy I felt OK. I was tired (I have been suffering with M.E. since 1996) but I was doing good, how hard can this be? By the end of the third week the ‘bowel’ side-effects had started to kick in and it was then that I realised that it was going to be an uphill battle from here on in. Due to having no tumour, my field of radiation was much lower than normal and therefore the side-effects turned out to be less severe than they could have been, but back then I thought it was hell on earth. Thinking about it, the radiotherapy was worse than the chemo was and yet all along it had been the chemo that I was more worried about! After the five weeks of external treatment I had three ‘internals’ (Brachytherapy) and then, just like that, it was all over.
It is now five weeks since my treatments ended and I am feeling better, physically. Things are returning to normal again and for my family life goes on as it did before. For me, I try to think of myself as the same person but in reality I am not. Nowhere near the same. I don’t know if I will ever return to what I was before or if it is even possible, but I have to believe that it doesn’t necessarily have to be a bad thing. Emotionally I am a mile away from where I want to be. For six long months all I have thought about and all I have strived for is to arrive at this place where I am now. Now that I am here, all I can do is look back on what I have been through and think about what could have been had things been different. I have lost so much. Chances to do things I will never be able to do. Time that has passed, which I will never get back again. Feelings of being normal, without the nagging fear that all this will have been in vain.
My journey so far has been a long and hard one but I have a feeling that the hard work has only just begun.
